Sex Work Research, Ethics Review Processes, and Institutional Challenges for “Sensitive” Collaborative Research

Abstract

This article examines challenges and barriers seemingly endemic to the research ethics review process. We argue that these challenges and barriers disempower community stakeholders in sex work research and that they put our studies and those who consent to participate in them at risk. To advance this position, we interrogate three of our own encounters with research ethics boards (REBs) in the context of current scholarship on meaningful collaborative research and REB roles and responsibilities in relation to sex work and other sensitive research. As these encounters illustrate, there is an urgent need for established REB processes to be opened up to allow for and respect non-academic expertise. We suggest that such policy and process revisions are particularly important given the growing requirement for meaningful stakeholder involvement in all aspects of studies that engage marginalized groups. In this new anti-oppressive collaborative framework, stakeholder community expertise thus informs study development and design, as well as the collection and analysis of data, and decisions regarding where and how study findings are to be shared. Research ethics review processes must be revised accordingly to acknowledge and give due consideration to community-based expertise. We conclude by proposing institutional and community-based strategies for resisting and revising current research ethics review structures and processes. Applying the lens of whore stigma to select REB encounters, this article contributes to existing research about ethical and anti-oppressive sex work research methods and methodologies, arguing that we must account for REB encounters in the growing body of theory that seeks to understand and articulate how best to conduct sex work research in partnership with sex workers.

Participatory action research: Developing a collaborative approach to modern slavery research with survivors of exploitation

“…A ‘peer researcher’ is understood to be an individual from the community being studied, who utilises their lived experience and contextual understanding of their community to help generate information for research purposes (Edwards and Alexander, 2011). The wider literature exemplifies the importance of including a diverse range of voices, particularly those historically marginalised, in the design, development and administration of the research that affects them (Ferris et al, 2021; Lushey, 2017; UKRI, 2020). Peer research methods recognises the agency and competency of individuals being researched to actively participate as co-researchers.…”

The ethics review and the humanities and social sciences: disciplinary distinctions in ethics review processes

“…Various scholars have highlighted how these imaginations of risk can prevent important research from advancing, particularly in the humanities, social sciences, and fields using community-based participatory research methods, such as the creative arts (e.g. Ferris et al, 2021; Massoumi et al, 2020; Sluka, 2020; Tamariz et al, 2015).…”

Learning Each Other’s Language and Building Trust: Community-Engaged Transdisciplinary Team Building for Research on Human Trafficking Operations and Disruption

“…They are often viewed with skepticism, as biased or lacking rigor, despite mounting evidence that this approach yields important insights, practical application, and critical knowledge on thorny issues (Wallerstein, et al, 2020; Warren et al, 2018; Bradbury, 2015). Academic institutions pose significant logistical challenges to community-engaged research including cumbersome financial processes, large indirect cost rates, oversight requirements, copyright and intellectual property disputes, and research ethics challenges (Ferris et al, 2021; Stringer, 2014). Yet, there are deeper and more damaging barriers to marginalized communities’ participation in academic scholarship.…”

“…Research abuses, the role of research in colonization and enslavement, power dynamics, and the harms and exclusions of current research practices has shaped a longstanding and justifiable lack of trust in academic research among Black and brown communities, indigenous peoples, and marginalized communities (George et al, 2014; Smith, 2012; Wallerstein et al, 2019). Doing research with communities and those most impacted by social issues and structural oppression, such as people with lived experience in trafficking, rather than on those communities, can ameliorate the objectification and knowledge extraction that can be part of traditional research methods (Ferris et al, 2021; Gerassi et al, 2017; Martin, 2013; Wallerstein, et al, 2020). Community-engaged teams must also grapple with misunderstandings and have persistence to work through challenges.…”

“…Community-engaged research happens when universities and academic researchers partner with people, organizations, and entities outside the academy who do not typically conduct research (Beaulieu, 2018; Furco, 2010). Inclusion of community partners can invigorate and democratize academic research so that it remains relevant and vital for the public good (Holland & Malone, 2019; Levin & Greenwood, 2017; Tebes & Thai, 2018; Ferris et al, 2021). However, issues of trust, respect, power, and communication pose challenges to transdisciplinary and community-engaged research (Heinzmann et al, 2019; Monteiro & Keating, 2009; Wallerstein et al, 2019).…”